My life with New Daily Persistent Headache

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My care coordinator.

I’ve spoken about the issues I have had with my several different care coordinators before. They are from my local mental health team. I’ve had three now, the first two guys were rubbish so I ditched them both. And now I’m onto my third which is a woman. Been seeing her for a fair few months now, every two weeks or so. I had issues with her even showing up, she has forgotten to show up three times now, which was very frustrating. But today with what I thought was a stroke of luck she actually showed up, which is a rare occasion.

She is trying to force me to do things, to get out of bed and do things even when I can’t because of the pain. I don’t want to do the things she is suggesting that I do, I just don’t feel like it. It’s not as if I’m doing nothing all day every day, yes I stay in bed quite a lot but I’ve started studying and when I can I go to taekwondo. I save up all my energy and spoons by staying in bed all day so I can do things like go to taekwondo when the pain isn’t too bad. She doesn’t seem to understand. I don’t think she fully gets it that I don’t just have small issues with pain, I’m actually in pain 24/7. I’m doing as much as I can and she’s just forcing me to do things. Today she wouldn’t leave until I promised I would do something. I stood my ground and just sat there in silence not suggesting anything that I would do so she would leave me alone.

She then went on to day that plenty of people live and function with pain and I should be one of them. Well this made me angry, what is she suggesting, that I’m weak for not being able to function fully and get on with my life even though I’m in pain?!

My appointments with her don’t help and she just ends up pissing me off because she doesn’t understand. Had enough of her and don’t want to see her again! At least I have my psychologist tomorrow who is ten times better and actually understands what it’s like for me, doesn’t try to force me to do things I don’t want to do and doesn’t think I’m weak.